Migraine - advice for referral?

GlasweJen

Im complicated so a little background before I get to my point; I was on a clinical trial of a drug 10 years ago and kept taking the drug post trial. In that time I've had a heart transplant and thousands of medication changes, all of them happen at the stroke of a pen with no intervention from my cardiologist (who arranged the trial) except when the trial was "live"

2 years ago I developed double vision for reasons unknown to anyone (I'm on my 3rd neurologist as well as having seen a specialist orthoptist and a neuro-ophthalmologist), it's suspected I have myasthenia gravis or a mitochondrial disease.

20 months ago I stopped being able to control the double vision and developed a migraine, I've not had a single pain free day since then (and I'm sure of this I have a diary!).

My GP was helpful and prescribed me amatriptilene and imigran but upon double checking the amatriptilene interacted with the unlicensed drug so we binned that and I survived on nurofen plus with the imigran.

In September I saw a different GP as I was having stomach problems, the GP told me to quit the ibuprofen (I'd already come off the one with codeine because I was worried about codeine headaches) and prescribed me omeprazole for one month.

In October I called the practice and asked for imigran on repeat as before and was told I'm not getting any more!

I persevered until January until the constant pain got too much and I made an appointment with the GP. I got a newly qualified doctor who isn't a GP and told him I'm at the point where the pain is too much and I need relief now. He made a huge fuss and faxed a list of drugs he'd like to try to my cardiologist and asked which ones I could have. Cardiologist said none of those but maybe this drug called topamax. The "not a GP" decided to refer my cardiologists recommendations to a specialist pharmacist and I've still not heard anything back - we are now at 9 weeks with me constantly chasing.

Yesterday I told the practice manager that the pain is so constant and I can't see a way out that I just want to drill a hole in my head or end it all now. She made me an appointment with a different "newly qualified dr who isn't a GP" and she's just given me ibuprofen despite me telling her that I already take 3200mg of that a day because I can just buy it from Asda. I also told her I want to end it all because I just can't see away out of this pain and I work with the public and the stress of dealing with people while in agony and hardly able to think is just too much especially when they come in greeting about a headache (I'm an optician) and she just shrugged it off and said I need to wait an indefinite time until this pharmacist gets back to the first "not a GP".

At this appointment I said I don't care if it's against protocol I want referred to a migraine specialist preferably someone who isn't afraid to prescribe and she said that she might refer me but she's going to talk to her supervisor first.

I'm at my wits end and just want something done. Does anyone know what you can do when your GP just doesn't have the skill to treat you? I can't move practice as the other practice in the area is actually a satellite of my GP and we are not in catchment for any other doctor.

Might also be with mentioning that I'm in Scotland.

soolin

I note you have already seen a neurologist , but ask for a direct referral back to a different one that specialises in migraine.

However, and mindfull of the no medical discussion rules, don't assume it is migraine by doing so you may rule out other help, the fact that you can work might mean it is a different condition. That's why seeing an expert in all forms of headache is necessary, just throwing pills at the problem may not be sufficient, you need to find the underlying cause.

If you have the equivalent of local prescribing groups or health authorities contact them, get a list of neurologists in your area with a specialist interest in headaches, and then you can ask and keep asking your GP for a referral to a named specialist.

I suffered migraines until I reached the age of about 45 and tried just about everything over the years but appear to have grown out of them. MY OH also suffered but after a minor accident ended up in physiotherapy who said he had a neck issue and did he suffer from migraine? a few weeks of learning certain exercises and he is virtually pain free now with no medication required at all. He had wasted years trying to treat what he thought were stress induced migraines when he actually had a physical reason for them.

Indie_Kid

I've seen 4 GPs over similar issues. They're willing to give me medication; but are choosing to ignore the fact that I have a pretty serious brain condition, which apparently, isn't related at all.

Have you tried something like gabapentin for the pain if you can take it? And can you get a second opinion from either another GP or neurologist?

tomtontom

Imigran is available over the counter. It's not cheap but might give you some short term relief? You can also buy the prescription strength version online, legal but probably outside the rules of the forum to say anymore.

I would echo soolin's suggestion of looking at the cause rather than just treating the pain. I get migraines due to muscular problems around my neck and shoulders, a good massage can bring a great deal of relief.

GlasweJen

They think the migraines are being caused by the double vision. I can't have an MRI scan because I have a pacemaker but I've had CT scans as well as the usual ocular pressure checks, visual fields are fine etc.

I have asked to be seen by the migraine neurologist at the Glasgow Southern general hospital but my GP is dragging their heels to refer. The only way I'm managing at work is mornings only and doing paperwork in the afternoon but it's hard and I'm finding it really difficult to cope. My GP practice has went downhill since the founding doctors retired and there are currently more receptionists than doctors, all the qualified GPs are part time and the still to qualify GPs see most of the patients which is really frustrating because they are all too scared to treat me!

GlasweJen

I can't buy imigran OTC any more because the local pharmacy and the one at my work have said I was buying it too often and if I needed it I am to get it from a doctor.

Confuseddot

Any way you could pay for a private referral ?

GlasweJen

I have Westfield health care through the work so I will see if they pay for private referrals.

Confuseddot

GlasweJen wrote: »

I have Westfield health care through the work so I will see if they pay for private referrals.

yeah go for it, especially if your company paying It will be quick as well fingers crossed you get some relief soon.

nashly

Get a referral to have nerve block injections and look into the benefits of the treatment. Good luck.

hunnisbunnis

ive nothing really useful to add but wanted to send you some (((hugs))) as im a chronic migrainer as well